Welcome Friends!
David Brian C.
Birthdate - April 29th , 2010
Main Diagnosis - Failure to thrive
THEME: Boys toys + one frog. fabric provided with funky frogs
Biography
David was born on April 29th, 2010 at 10:59 PM. He weighed 5lbs.
11.ozs. and was 18 ¾ inches long. He was a little on the small side but we were
reassured that he was a healthy and strong baby.
The first few weeks David seemed to be thriving. He was back up to birth weight
within a week and seemed perfectly content and happy. When he was a couple of
weeks old, we started noticing the subtle signs (arching, crying after eating or
when resting on his back) of GERD (reflux) which had plagued our other son for
the first year and a half of his life. Wanting to be as proactive as possible
and nip it in the bud, we got a prescription for an anti-acid and waited to see
if it would help at all.
Around this time, David started really having trouble with nursing. We went to
the lactation consultantst for help and tried various things to improve our
nursing relationship. Every time we went in, the consultants would tell me that
they felt there was something “not quite right” about David.
When David was a month old, one lactation nurse commented that his eating
pattern seemed more like a newborn than a month old baby and asked me if I was
sure he was born at term. Another nurse said his skin looked like that of a
newborn and asked me the same thing. The lactation consultants thought he might
have a tongue tie and told me to ask his pediatrician for a referral to another
doctor who clipped tongues.
While we waited for the referral to have his tongue clipped, nursing continued
to be a challenge and eventually my milk supply was almost gone and I thought I
might have to abandon nursing completely. We were advised by the lactation
consultants as well as David’s pediatrician that we needed to start
supplementing with either pumped breast milk or formula because David wasn’t
getting enough to eat at the breast.
In desperation, we rented a hospital grade breast pump and I took a “nursing
vacation” to build my supply back up and we started supplementing with pumped
milk in a bottle and even tried finger feeding and something called an SNS.
Unfortunately, once David had experience with an artificial nipple, the little
nursing he was doing ended.
The following week, on a Monday David has his tongue clipped and we were
hopeful that with an increase in my milk supply and an unrestricted tongue David
would start nursing again. That Wednesday, we visited the lactation consultants
again and one of them sat me down and showed me David’s growth chart. She told
me she was very concerned because he had fallen off his growth curve and told me
she wanted to talk to his pediatrician about getting him a referral to the
Feeding and Growth Clinic. While we were there she tried to feed him a bottle of
formula and was unimpressed by his sucking pattern and thought there was
definitely something “wrong”. She told me that David needed to be taking in
between 20-24 ounces of breast milk or formula every 24 hours and that anything
less than 20 was unacceptable.
Between that Wednesday and Thursday David took in a pathetic 13 ounces and I
called Thursday morning for an appointment with his pediatrician. At the
appointment, David’s pediatrician noticed that his heart sounded a little fast
and that his breathing sounded a little“off”. She wasn’t particularly concerned
about those things alone, but given his history and failure to thrive, she
decided to order an echocardiogram to rule out any cardiac problems that might
be causing him difficulty with eating and gaining weight.
On Friday, I took David in for his echocardiogram, expecting things to go
quickly and to hear that everything was fine. After the echo, they took us to a
room across the hall for an EKG and then I was told the cardiologist wanted to
meet with us. He started by asking about family history and then he told me that
David’s heart was functioning at 2/3 capacity and that he didn’t know the reason
why. He called the doctor on call to suggest that David be admitted to the
hospital for further testing.
We went straight from the cardiologist’s office up to the Pediatric Intermediate
Care Unit. David was hooked up to monitors and started on heart medication. We
saw a neurologist, an occupational and speech therapist and a dietician as well
as the on-call doctor that first day. They ordered blood work and a chest x-ray
and the therapists evaluated David’s eating pattern and came up with a feeding
plan. We were told that they were testing David for metabolic disorders, viral
infection and malabsorption.
We spent the next eleven nights in the hospital. We learned that in addition to
the feeding and cardiac problems, David’s neutrophil count (a type of white
blood cell responsible for fighting bacterial infections) was on the low side,
although it improved while we were there.
David’s eating grew worse and he stopped gaining weight completely. Finally
they decided to put in a ND feeding tube. Once the tube was in, David started
gaining weight again and we were discharged from the hospital and told to follow
up with various specialists and wait at home for test results.
In July, the initial test results came back negative, however David’s eating did
not improve and we prepared for David to undergo surgery to insert a more
permanent gastrotomy tube in his stomach.
In July David also experienced an “acute life threatening event” where he
stopped breathing for a minute. He has hospitalized overnight for observation
and it was determined that the event was caused by his reflux. He also had an
upper GI series done at the end of the month and it was determined that in
addition to the surgery to place the G-tube, David would also have something
called a Nissen Fundoplication where they wrap the upper part of the stomach
around the lower part of the esophagus to prevent stomach contents from being
regurgitated back into the esophagus.
At the beginning of the August David had surgery. The surgery itself was
successful apart from a small bump in the road (David had some problems when
they taking the breathing tube out and ended up spending a night in the PICU).
He spent about four days in the hospital and then came home.
In September, in addition to the speech (feeding therapy) he was receiving,
David began occupational therapy to help his mild gross motor skill delays.
David’s weight gain continues to be a concern although within the last month or
so he has had experienced some nice catch-up weight gain and is now at right
about the 5th percentile for weight and height. His head size is in the 50th.
At this point the neurologist and the geneticist are of the opinion that David’s
problems are probably caused by a chromosomal abnormality or possible
mitochondrial disease and we are currently awaiting the results of further
testing. David is followed by his primary care pediatrician; a pediatric
neurologist; a geneticist; a pediatric cardiologist; a pediatric
gastroenterologist; a pediatric ophthalmologist and sees a home health dietician
weekly.
In spite of everything David remains an incredibly sweet, easygoing little
fellow who always has a smile on his face and loves to be held and cuddled.
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Thank You
Just wanted to let you know that David's quilt and Easter present arrived in the mail. The quilt is stunning!!! I am waiting to let David see the quilt until his birthday on Friday but I will be sure to take lots of pictures with his new beautiful gift then. And thank you so much for his Easter present; that was really sweet. Thank you! Thank you! Thank you!
